Bernalillo County, NM
Current health: “Much improvement on long-term antibiotics, but still struggling.”
Chronic Lyme is like stepping through the looking glass straight into Hell. –Jonathan Locke
After decades of misdiagnosis and mistreatment, Jonathan’s health began to seriously deteriorate in 2009. It took visits to twenty-three doctors and tens of thousands of dollars in medical costs before he was correctly diagnosed with Lyme disease. “My family doctor simply gave up on me in the end,” he said. “After being my doctor for more than twenty years, she made it crystal clear that she had no idea what was wrong with me, had nobody else to refer me to, and didn’t want me to come back. And this was at a major hospital in Seattle. It’s at moments like these when you realize just how far the medical world really is from coming to terms with Lyme.”
Jonathan is a software architect, a technology writer and the originator of Apache Wicket. He worked on Java for Sun Microsystems and on platform technologies for Microsoft. He says he’s very lucky now to be working for Telenav on OpenStreetMap, which is essentially the Wikipedia of maps. The company has been extremely supportive of his condition, Jonathan says. “There have been times when I had enough trouble with memory and focus that I thought I might eventually lose my job. I make my living by thinking about really complex problems. If this condition affects my brain in a significant way, that would be some very deep water. So, Telenav’s ongoing assistance and understanding has been really crucial to me and I’ve been able to stay employed through this ordeal, at least so far. Not everybody with chronic Lyme is so lucky in this respect.” Here he talks about coming to terms with Lyme and the shockingly complicated world of controversy and confusion that surrounds this disease.
“The most difficult part of chronic Lyme is the rude awakening that most of us get sooner or later that you simply cannot trust the medical community on this issue. Everything is different once you’re diagnosed. Left is right, up is down. And it’s up to you to make sense out of this crazy wonderland on your own — and all while fighting daily battles against severe and disabling symptoms.
“On the one hand, you have the IDSA’s mad hatters, who are supposed to be leading us, but are instead absolutely intransigent in pushing questionable treatment guidelines for a disease that we are only just barely beginning to understand — and they are doing this, by the way, in the face of a rising tide of protest and contradictory evidence from doctors and major research institutions, not to mention an anti-trust investigation that has revealed multiple undisclosed conflicts of interest on their board, a board which further appears to simply dismiss members who have a different view of Lyme disease. And as you go down this rabbit-hole of awakening into the depths of this awful controversy you’ll inevitably start to make connections between Lyme and a whole host of other rapidly growing diseases. And you’ll wonder ‘How much of this is just Lyme?’
“You know, if the CDC says three hundred thousand people are being diagnosed with cases of Lyme each year (according to their very strict definition), what about the other 40% of cases that we know will be false negatives on the near-worthless Western Blot antibody test that is the “gold standard” for Lyme diagnosis today? And just how many more people are sick with Lyme and have no idea what’s wrong or, far worse, are being treated for something else (ALS, MS, Alzheimer’s, CFS, fibromyalgia, autism, cancer, basically any systemic problem with immunological and/or neurological involvement)? And, is the total number of people infected each year closer to a million or is it maybe even as high as two or three million? It will really start to make you wonder and you will definitely see people around you who either have it for sure or might have it and just don’t know yet.
“While a lot of this train wreck is hard to look away from, on the other hand, it’s not all a conspiracy and not everybody has Lyme and it’s important to keep some perspective and also to understand that there’s just so much terrible desperation out there (and if you have neurological Lyme you will eventually be desperate), that there are doctors and patients doing questionable and really scientifically-unsupportable things. And they’re actually doing these things not because they are quacks or loonies, but because they’re just out of ideas, and because the pain and the exhaustion and the disability and the sheer misery just won’t stop. You know, you’ve got all these patients who don’t know what to think because of the hysteria and disinformation being created by the IDSA, and so they go with their gut and refuse antibiotics (which in some cases may be their only hope), and these patients when they get sick enough will eventually be making a choice between suicide and spending their last nickel on hydrolyzed silver IVs or bee venom therapy or Rife machines or getting deliberately infected with malaria (none of which probably does anything for anyone!). But if you’re that person, what are you realistically going to choose? Even bee venom therapy is probably a better alternative to suicide. You never know, in spite of all evidence to the contrary, it might work.
As a software developer, Jonathan is working hard in his spare time to “hack on Lyme”. He’s taking Bioinformatics from UCSD and Machine Learning from Stanford, reading research papers and watching biology videos on Khan Academy. He’s even beginning a new Open Source library for bioinformatics, although he emphasizes, “It’s just baby steps right now. I learn best by modeling complex things in code and my understanding is still very limited.” He says it’s his hope to support the missions of Lyme non-profits like Bay Area Lyme until he can eventually make more direct contributions in a laboratory that is working on unraveling the mystery of Lyme disease.